Lately I’ve been researching my disease in an effort to determine what my future holds for me. For the past 25 years, I’ve been living with an invisible disability. Yes, I take medications and I have four different doctors plus a dietician, but mostly up until now unless you were with me for a day or two you wouldn’t be able to tell I have a chronic illness.
I have found this both a blessing and a curse. On the one hand it’s great because people don’t stare at me or treat me differently because I look just like they do, healthy and young. It’s interesting to see the surprise on people’s faces when they learn just how much I’ve been through and am going through.
The curse part comes when others expect me to be able to do everything they can do and I have to explain why I can’t. It also comes when I feel like I have to start every new relationship by providing a full disclosure of all the problems the person I’m interested in can’t see.
Mostly though, I’ve enjoyed the fact that my disease is invisible. I am a person who likes to watch other people as opposed to being a person who likes to be the centre of attention. I like blending in, and still shudder at memories of being little and so obviously sick, or being in the girls’ change room at school with the huge transplant scar on my chest.
So when I went to Target with my sister and our friend Dave, I was anxious. After a fantastic weekend filled with socializing and going out, I was exhausted. And to top it all off, I was in the early stages of a cold. For me, going to Target involves a huge expenditure of energy on my part. Walking up and down the many aisles leaves me breathless on a good day.
I knew I wasn’t going to make it. Usually, to help myself, I try to have a cart I can sort of use as a walker to steady myself and lean on when I get really tired. Since I was already tired, I knew that wasn’t going to cut it this time. So instead, I gathered up all of my courage, and asked to use a scooter shopping cart.
Being in a new situation, I was a bit worried the Target employees would question why I needed one and I would have to pull out my pacemaker/defibrillator card from my wallet to prove my need. I realised later those thoughts were ridiculous because it is in Target’s best interest to provide their customers with anything they need to spend their money in the store, but I was anxious.
Once on my shopping cart scooter, I felt awkward. I worried everyone was looking at me, wondering if I was a dumb kid on a joyride and whether I really needed the scooter. In this particular situation, however, the fears were all in my head. I don’t drive, so it took me sometime to get used to steering and my speed. But when I accidentally wedged the scooter between two aisles while trying to turn, two men helped me by lifting and straightening out the scooter for me.
At the time, instead of feeling thankful, I felt embarrassed. I loathe asking for help, and when others help me because of my illness, I tend to feel like I owe them greatly. I can tell those I love to ask for help my help when they need it, but I try my best to be self-sufficient, and when I can’t do things I feel bad about myself.
When I finished my shopping however, I felt proud of myself. For once I had recognised my limitations and instead of pushing my body to new heights of exhaustion, I respected my body and endeavoured to take care of myself while still doing what I wanted to do.
As my illness becomes more visible, what I hope I keep in mind is that it doesn’t matter what other people think of me. Although I hate when I think other people are watching me, if I need to do something for my health, like sitting down and resting while shopping at a mall, or mixing a protein powder in with my food or drink or taking medication, then I shouldn’t be reluctant to do that.
After all, it is what I do now that will determine my health situation in the future, not what other people think of what I do.